Washington DCWhen I was working actively as a physician, my patients rarely came to me with symptoms of early cognitive impairment. In fact, I can’t think now of a single one. Family members did occasionally bring in the patient when the dementia was more advanced. I remember Joseph, for instance, who brought his wife and told me that there was “something wrong with mama.” Anyone had only to take a brief look at mama to know that she was pretty much out of it. Perhaps, I thought at the time, mama’s day-to-day changes had been so imperceptible that Joseph just hadn’t noticed. Perhaps, but I now doubt it. At her stage in the illness, I can’t imagine a husband not noticing.
I was aware of my symptoms several years before other people would have noticed. True, I didn’t have it checked out with a neurologist for a while, either, but I noticed the changes right away and asked Marja, my daughters, and a couple of other friends about it. If they had mentioned anything, I would certainly have followed up with a doctor. Are other people not aware of their cognitive changes? If not, why not? Marja and one or two others have suggested that my previously high IQ made the losses apparent to me before others could become aware. But that seems unlikely. I see no reason why memory loss and confusion should be more noticeable to people with high IQs than to others.
None of us wants to hear bad news, of course. People with cancer symptoms put off seeing doctors, too. But the reluctance to find out more about cognitive decline seems so much stronger. We humans have amazing denial mechanisms, of course, but why are they almost universally so powerful in dementia. It’s shame and fear, I suspect: shame so strong that one can’t bear to entertain the possibility and fear of isolation so overwhelming that telling others—even intimates—terrifies us.
Whatever the cause, the failure to share deepens the shame, intensifies the loss, refuses the love and comfort of human accompaniment, and smothers the chances to express the many levels of goodbyes so necessary in this disease. It only exacerbates the isolation.
There is a real price to silence. If this writing brings only one person out of the closet, it will have been well worth it.